Research That Matters (January 17 - 20, 2008)

Purpose: In Canada, over 1.7 million adults aged 45 to 64 provide unpaid care to almost 2.3 million seniors with chronic disabilities or physical limitations. From 7-9% of older Canadians retire and about 3% quit work to provide care. While there is considerable body of research on informal caregiving in North America, few studies examine the consequences of retiring to caregive and rarely examine what happens when the caregiving is over. This paper presents findings of a qualitative study which examined the life experiences of primary caregivers who had retired from the labor force to care for family members and for whom caregiving has ended. One of the main objectives of the research was to explore the role of public policies and health and social services in the participants' experiences over the caregiving trajectory.

Method: The study employed qualitative methodology consistent with the phenomenological tradition. In-depth, semistructured interviews were condcuted with 60 former primary caregivers (30 women and 30 men). Purposive sampling was used to select respondents from various socioeconomic and ethnocultural backgrounds, and from different parts of the country. The participants had to be over the age of 45, to have had retired from the labor force to provide primary care to a relative, and to be at least one year post-caregiving due to the death of the care recipient. The recruitment strategies included advertisements in the national newspapers, posting of flyers at various service agencies, and word-of-mouth. The interviews were transcribed, thematically coded and analyzed using NVIVO software.

Results: The majority of the study participants, women in particular, suffered substantial economic losses due to leaving their jobs to caregive, and all reported high emotional costs of caregiving. At the same time, the study revealed an overwhelming lack of assistance afforded to informal caregivers by the government and by health and social services. The study participants found the quality of public home care to be inadequate, hospital and nursing home conditions often appalling, and the medical staff insensitive. In most cases, doctors and nurses assumed expert positions, disregarded caregivers' feedback, requests and concerns, and did not provide them with the necessary information. Most participants were completely forgotten by the service system when the caregiving was over and when they required the most financial and emotional support. Those between the ages of 57 and 64 had especially hard time post-caregiving: on the one hand, they faced age discrimination in their attempts to re-enter the workforce; on the other hand, they were not old enough to qualify for Old Age Security (OAS), Guaranteed Income Supplement (GIS) and other public benefits.

Implications: The study calls for the development of a comprehensive public policy that would offer financial and other forms of support to informal caregivers, including the improvement of the home care system, effective dissemination of relevant information, strengthening of alternative service delivery models (such as client support groups), and possible retroactive payments to former caregivers who had to leave the workforce to provide care.